Tuesday, September 23, 2014

I gave up a while ago, but not in a way that you would think. Anyone who is not in our shoes, may not entirely understand but let me try to explain. Giving up doesn't mean we have "given up'' in a sense. When we tell people about our son's medical problems and how difficult it is to see him gain and lose all of his skills, a popular phrase we hear often is, "no one knows what Carter's future holds, miracles happen every day" or "doctors don't know everything". And I totally 100% agree, but there's another side to this as well. Have you ever wanted something so badly, that you forget to appreciate what you DO have?! When Carter was a baby, I hoped so badly that he would catch up in development or start doing the things his therapists worked so hard on. I spent most of my time wishing for something that wasn't there. I cried for all the things I had dreamed about for my first child. I wanted all of those mommy experiences that every mother imagines. I wanted to take Carter to the park and watch him make friends, I wanted to share my favorite snacks and foods with him in hope that he would follow in my footsteps, I wished for the day that my husband could play sports with his only son. And over those years, I neglected to appreciate the miracles in front of me. The smiles and giggles that Carter had over the rare toys he enjoyed. The glimpses of eye contact that we worked so hard on in speech therapy. The negative test results for devastating disorders that doctors wanted to rule out. I let all those things pass me up while I still held hope for bigger things. Without even realizing I had given up, I did. But something different happened that may seem contradictory. I didn't lose hope nor did I feel defeated. Instead I feel empowered, stronger and happier. I celebrate all the little things and brag to my family and friends about Carter's favorite squishy ball. I laugh and enjoy the funny faces Carter makes when he watches his sisters dance and sing. I clap and applaud when Carter poops on the potty. I feel triumphant when Carter has a pain free family vacation where he is happy the entire time. I go on and on about the 12 ounces of pureed baby food that he has consumed twice a day for a month now. Do I dwell on the what if's and possibilities that could happen at any time in regards to Carter's medical conditions? Yes, every single day. Do I always hope for a new cure or treatment that will help my child live a better and longer life? Every moment of every day. But I give up on wishing for something that isn't meant to be for my son. And the most important part of this, is that I am OKAY with that. Being okay with something I cannot control, was the hardest obstacle by far. I believe that miracles sometimes create unrealistic expectations. Miracles don't always mean a magic cure or over night phenomenon. In my world, miracles are simply every little thing that my son does. He is alive, he is happy and he is beautiful. THOSE are true miracles. So I beg of my family and friends, to understand when I say that I have given up and that you will understand and respect that I don't wish for perfection anymore. I don't beg God to change to my child. Would you want God to change your child and the gift you have been given? My every day miracle goes by the name "Carter".

Monday, September 8, 2014

Having children is amazing in so many ways. But there is something oh so very special about seeing your children become siblings and growing together; in more ways than one. There's nothing I love more than seeing my 2 year old grow into such a loving, devoted sister to her extra special big brother. She watches him go through hours of therapies, receive tons of meds every day, get feeding tube boluses and non age appropriate care (diaper changes and baby food meals). Instead of her questioning or wondering why he doesn't walk, talk, eat regular meals and go on the potty, she learns how we do things and she does her best to help. She cheers her brother on when he tries so hard to stand or he finishes a bowl of sweet potatoes. She even helps feed him her applesauce to which he cracks up laughing. She stands in front of him as his therapist helps him walk and she waves her hands as she says "come on buddy, you can do it". When his speech therapist works on reciprocal sounds, Lily reminds her that "Carter can't talk". It's simply amazing what she understands even when she never asks why. To her, it's not a question of why. To her, nothing is wrong with her big brother. To her he is simply "my Cart, my brother". To see unconditional love and devotion like this, is everything I ever hoped for, for Carter. Lily is truly her brothers best friend and he is hers.

About Me

I am a devoted mother to 3 wonderful children. My son Carter is 4 years old and battling Mitochondrial Disease. He has 2 sisters, KayLeigh and LilyAna who adore their brother. I am fortunate to be a stay at home mom. My life requires the ability to adjust quickly to new changes and circumstances and I'd like to say I have become a professional at learning to duck and dive! I have an amazing husband who works very hard for our family and I am so lucky to have. He is the best dad and husband I could ever ask for.

In my blog, I will share my journey as a mom to a medically complex child along with raising a rambunctious 1 year old and smart, creative 8 year old. I hope to raise awareness about Mitochondrial disease, cerebral palsy, epilepsy, and eosinophilic esophagitis. Join me on our journey!